The first of three blog posts addressing the question, “How can I find reliable information about autism and autism research?”
Posted by Ryan Butler, assistant director of operations for Autism Speaks Autism Genetic Resource Exchange.
When I started working as a behavior therapist, I wanted to learn as much as possible about autism and the effectiveness of available treatments. Even with a college major in the sciences, I found it difficult to sift through all the articles and distinguish good science from bad. I could only imagine the challenge faced by parents and other individuals without a science background.
In the years I’ve worked at Autism Speaks, I’ve spoken with so many parents who want desperately to find information they can trust. This inspired me to begin gathering information on what constitutes solid, evidence-based research findings and how to identify this “gold” among the flood of questionable content available on the Internet. In other words, how can one recognize credible research on autism?
A typical parent or other layperson might start with an Internet search on “autism research.” This brings up hundreds of thousands of links. Unfortunately, Google doesn’t necessarily put the most credible sources at the top. So how does someone begin to sort through them?
To find reliable, evidence-based information, look for scientific journals, the webpages of researchers publishing in these journals and the websites of medical schools, universities and science-based organizations such as Autism Speaks and the Simons Foundation Autism Research Initiative.
In evaluating other articles and webpages, look for links to primary sources. Primary sources include the papers, or research reports, published by the scientists who conduct a study. These reports undergo “peer review” before appearing in a scientific journal. As its name suggests, peer review involves evaluation by respected experts in a given field of research. This helps ensure that the articles appearing in professional journals reflect the best current research.
When evaluating other sources of information, here’s my checklist of advice.
Broadcast and Print Media. Thanks to rising public awareness, stories about autism and autism research frequently appear in the popular media. This includes television, newspapers and magazines –many of which post articles and videoclips on their websites. These stories tend to report scientific findings in brief, within the limited context of the “story.” Remember that these stories can provide an informative “gist.” However, they frequently contain errors or a slanted view in their “interpretation” of the results. Bottom line: They’re not “primary sources”of research information.
Websites. Today, anyone can create a website. So how can you distinguish the credible and authoritative from the slapdash or slanted? I recommend looking for the following indicators of reliable, evidence-based information:
* The website is hosted by a respected medical center, research institution, government agency or non-profit organization with scientific expertise in the area of autism.
* The website links to other respected autism websites. (See above.)
* The website cites or links to primary sources for information.
Searchable Online Databases. Online databases allow users to retrieve information using “keywords.” Some pull up popular articles. Others retrieve scientific publications. Online databases can be tremendously useful. However, keyword searches often pull up more information than the average person needs or can possibly review. Some don’t distinguish credible from unreliable publications. Others require a subscription, though these are often open to the public through libraries. I recommend the following:
PubMed — Maintained by the National Library of Medicine, it contains an extensive collection of medical and psychological literature, with an emphasis on scientific journals.
SCIRUS (for Scientific Information Only) — Maintained by Elsevier Science, it likewise provides a searchable database of research journal articles and other sources of scientific information.
ERIC (Education Resources Information Center) – Supported by the U.S. Department of Education and the National Library of Medicine, it contains an extensive collection of research information in the field of education.
Autism Speaks Grant Search – This searchable database contains information on more than 500 research projects funded by Autism Speaks.
Local Libraries. Public, medical and university libraries provide access to far more scientific journals and searchable databases than you can access from a home Internet connection. In addition, reference librarians can help guide your search.
Article Delivery Services. A number of free services will deliver content or content links to your inbox. At one extreme, these include unfettered “Google Alerts,” which will pull in articles and web content based on keywords. The caveat is that no one is screening the reliability of the results. You can take this up a notch with a PubMed “citation alert.” It will allow you to use keywords to set up periodic notifications of related scientific articles. Here at Autism Speaks, we’ve just launched our own biweekly article delivery service. Autism Speaks Science Digest delivers a roundup of original news stories, blog posts and feature stories by the Autism Speaks science team and our affiliated researchers. (Subscribe here.)
Look for the next installment in this series of posts on finding, reading and evaluating evidence-based information on autism and autism research. Got more questions? Email them to us at GotQuestions@autismspeaks.org.